Update 7/21: DD8 saw a psychiatrist for full evaluation

[mlwear]

www.autism-society.org was suggested. When you go to their site find the link that lists the chapters. Find the one nearest you. Give them a call. Likely they have someone designated to talk with parents of newly dx'd children. Most will also send you a packet of information.
Services: Many vary from state to state. Often you have to dig around for these. Ask others that you encounter in your situation.
Have you considered a private assessment by a developmental pediatrician, pediatric neurologist or psychologist. Insurance may cover it. (ours did). In our case I found them to be much more useful than the school. Also, their reports are very helpful when discussing school services.
This is a very difficult time. Many of us completely understand.

 

[Figment1964]

This is a very difficult time. Many of us completely understand.

I have nothing more to add but totally agree with the fact that many of us do understand. Hang in there!

 

[riu girl]

Update: I am now more confused then ever. I would appreciate some opinions. I just came from the official meeting at school re: DD8s assessment. Overall: they said that the severe/profound ADHD has decreased to mild ADHD. So that is good news. Re: the aspergers test that was performed, I was told that yes she did receive an elevated score that may indicate that she has a very mild form of aspergers but the tester himself explained that on the test DD8 scored extrememely high on the cognitive component (as Aspergers kids do) but generally scored NOT within Aspergers range in most of the sub tests. He said that there were a couple of sub tests with elevated scores and this combined with the extremely high cognitive scores (within the Aspergers test) resulted in a score high enough to call her Aspergers. But the evaluator said that he felt the score was not an accurate score and he would NOT classify her as Aspergers. He also said that after spending time with her and talking to the teachers etc at the school she just does not fit the criteria to be an Aspergers kid AT ALL.

I hope that this makes more sense to someone else since it does not make a lot of sense to me. I like things to be "cut and dry" and now I am simply confused. I should be very happy but now I'm not sure what the dx's are. I assume it would be mild ADHD, and maybe a few Aspergers tendencies?? He didn't mention SID to me at all. I don't know if he tested for it seperately or if it was part of the Aspergers test, or if this was looked at at all.

Regarding recommendations they are suggesting more play dates (one on one ) with peers, a social skills group at school (which she has been in for two years already). I asked them about behavioural agencies in the community and surrounding area and they were very aware of them and have suggested/referred kids to them but felt that she has matured so much in the last year that she would need these programs. They are also eliminating her in school support (which I agree with since her behaviour/academics have come a LONG way in the last couple of years).

I am happy about the outcome. I am just still trying to process all of the information (it was a 1.5 hour meeting). I just always thought that a kid this intelligent (ex.she explained DNA tonight to me without anybody teaching it to her, she read a book about it she said) with poor social/emotional skills would have to be labelled something besides ADHD.

Any thoughts would be GREATLY appreciated.
Suzy V.

 

[lewdyan1]

Not sure what to say, but wanted to give you a

 

[Nik's Mom]

I feel your frustration, Suzy! Don't you just want to scream? It's like an up and down roller coaster ride, but not fun at all! Just try to hang in there. We're here for you. I know for my ds, I'm going to look into something called regional center. It's a place that offers support and services for disabled children in our area. You may want to see if there is something like that in your area. As far as the school district goes, keep up the good fight! Don't let them try to give you the brush off and remove your child from services that she needs.
Keep your chin up!

 

[riu girl]

Thanks for the support. I just wish I knew if I had an asperger's kid or not? I know this may seem strange but I need to live a my life a certain way and the not quite knowing/being unsure of a particular situation is hard for me.
Form what I have written, anybody want to give their opinion whether I should think of her as Aspergers or not???
The school is bent on saying she's not, but the overall test results are saying yes or at least maybe!!!
Suzy V.

 

[Nik's Mom]

We had the same problem as you with our son. The school district kept saying he's not autistic, but our son's teachers thought he was. So we finally went to a pediatric neurologist. After testing, he diagnosed our son with high functioning autism and we provided that diagnosis to our school district for services. If you can get our child to a developmental pediatrician, they probably can give you a better idea of what she has.

 

[Maryr1]

Suzy, My thoughts and prayers are with you and your family. I always try to tell myself that once I know what I am dealing with, I am better able to work with it and do my best. The initial few days are always hard, but once I get my feet on the ground and my head clears, the path I am on becomes clearer.As you know, I am in a very similar situation with my DD.The best thing your daughter has by her side is YOU. Take care, take time for yourself,nuture yourself and know that you are not alone.
Your friend,
Mary

 

[arubalisa]

Hi there Suzy!

My wife asked me to answer you; I am a Special Education Teacher in Georgia, near Atlanta. Many of you may not like what I have to say, since I have a habit of being “blunt”, from New Jersey, so give me a little break, Ok, here we go.

DSM IV states that Asperger’s and ADHD CANNOT coexist. You are one or the other. What are her IQ scores, there should be 2, full scale and verbal. What is the point spread? If it is extreme, greater than 20 points that I would say you have an Asperger’s kid. Would be called a non-verbal learning disability.

What specific tests did he give? Was one the ASD and the other a functional behavior assessment? Where they school trained, or an outside source?

Hate to say this but many teachers are clueless, you are the one living with her, and many times the symptoms for mild Asperger’s do not present at school, as well as many teachers do not know what to look for. This is due to the fact that many Asperger’s kids appear “normal” but have a few “quirks”. Many teachers just have experience in dealing with children that exhibit cognitive challenges.

I would find a person that is specifically trained to diagnosis Asperger’s, you can start at , http://www.aspergers.ca/

You daughter is very bright, she talks about DNA, and does she have a specific interest, like rocks? Does she prefer the company of adults to other children? Is she a little controlling with adults and children during an activity? Does she have a large vocabulary? Is her tone of voice “flat” at times and does not have any inflection?

These are just some of the top items to look at. Does she like computers? Does she respond to incentives and rewards that only make sense to her? How is her handwriting? Many Asperger’s kids have poor motor skills. What about tactile and sensory issues? Loud noises? Excellent hearing? Great sense of smell? Does she not care for dolls? Does she lack imaginative play?

Many times girls are not going to be diagnosed with Asperger’s, since typically if appears mainly in boys. It is not likely that any child that has Asperger’s, and then properly diagnosed has labels like ADHD, OCD, and Depression, Anxiety disorders as their disability since the Asperger’s can mask itself in many ways.

I would suggest you search out a person that only does Asperger’s diagnosis; good term to use is an Asperger’s Clinician as the key word to people.

Hope this helps, and please feel free to pm me directly if you like

 

[roseprincess]

Suzy, I just want you to have some

Arubalisa's husband, I do disagree on the Asperger's and ADHD do not coexist.
I have seen it coexist. My ds has been diagnosed as ADHD by his pediatrician since age 3. My ds also has been diagnosed thru school with an autism specialist as PDD-NOS at age 2. He is 8 now. He actually is more Aspergers, even tho I never I got him officially diagnosed lately. We do Greenspan's floortime at our school district. I have been told throughout the years of my ds's floortime people that any kind of autism and ADHD can go hand in hand. They have seen it in my son and these floortime people have seen it some other autistic kids as well. My son just recently qualified in the Gifted program at school- scored very high in non-verbal, visual- spacial.
So, by observation and testing, yes, ADHD and anywhere in the autism spectrum disorder can coexist, maybe not in all autistic kids, but it can coexist. My dd also is ADHD as well, she is special needs also, not autistic,
but has a heart condition.

Everyone has different opinions, To each his own.

Rosemarie

 

[mbb]

Any kind of testing/evaluation - that is not over an extended period of time - is only a "snapshot" of your child's behaviour's. Just like looking at a picture that you're unfamiliar with, it would be impossible to know what is beyond the borders of that snapshot...

It's all frustrating..and we're here to help...I wish I could help more

 

[Odie]

I have a 6 year old son daignosed as severly autistic. Always be wary of the school,s diagnosis. Their primary concern is not your child. They know first hand how much it can cost to provide appropriate services. Not sure about Canada, but in US we have a federal law know as IDEA which all states must comply with. I agree that you need to see your own specialist and not rely on the school's "expert's" opinion. What experience does that person have with diagnosing Aspergers? When it comes to your daugther, worry less about any stigmas or concerns over a label, autistic or not, and more about what services she can get with the appropriate diagnosis. The best piece of advice I got four years ago was stop talking about just the great things a child does, and ensure the person evaluating your child hears about everything bad. We all wish to brag about the good things they do, but without an evaluator knowing in detail all the bad, you'll never get an appropriate diagnosis. Hang in there!

 

[tinkerbelle22]

Dear Riu Girl -This would be my advice to you: first keep in mind that all of this - autism, asperger's, and even ADHD are part of a spectrum, a continuim - many shared symptoms, manisfestations, and approaches when addressing. It sounds like your daughter is somewhere on this continuim - and it may even change up or down or she may possess some qualities on one part of the spectrum and others on another part. First you have to look at what she NEEDS. Sounds like academically she is sailing along beautifully and behaviourly she is much improved. But socially ( and this is very important - don't let any educator every say this doesn't impact on education) she may have substantial needs. In order to qualify for those services (e.g. social skills training, peer mentoring, etc.) your school district may have to give her a classification of aspergers. I would find that out. In other words : first, what does she need and second get the diagnosis that will provide her with those services. If your school district won't give her that diagnosis, you can find a private evaluator/neurologist/psychologist who will.

The special educator who wrote above from New Jersey has a good grasp of aspergers when he asked you some of those questions e.g. relating better to adults, interesting incentives/rewards. Those will give you a good idea what to expect.

Good luck to you Riu Girl - your daughter sounds like she is making wonderful progress even though this possible diagnosis may sound more serious - In fact it may give you better insight into what was behind the ADHD all along - attention difficulties are not uncommon with aspergers or autism. She sounds terribly bright - and obviously much loved.

 

[mlwear]

Lots of good advice here that I won't repeat.
Your child sounds somewhat like my oldest DS. Youngest DS has classic autism. But older is much different. He has a gifted IQ, some sensory issues, many Aspergers-like qualities, but would be extremely high functioning. He has been given an ADHD label, but doesn't seem to quite fit. A developmental pediatrician suggested (didn't dx because exam wasn't extensive) Non-Verbal Learning Disability. Do a quick search and see what you think. I had never heard about it. Doc said characteristics mimic characteristics of Aspergers to those who aren't highly qualified. (I beleive Asperger originally included NVLD as part of Aspergers, but it is not separate---after a while the spectrum gets very broad.) Doc even said that if it gets him better services go ahead and let the school call it Aspergers. I thought that was weird, but I'm sure he's had his years of fighting the schools.
Just an idea to explore. Best of luck.
PM me if you have any ?'s.

 

[riu girl]

I just can't believe the number of people who responded to/have read this thread. I don't want to sound like a total sap, but the support/compassion is beyond anything that I could ever imagined. If these events had occured in my life a year ago (prior to me finding DIS) I would have been at a total loss as to where to turn for support.

Things are good here. I have come to the conclusion that Gracyn (DD8) is who she is and all I can do is be the best parent/advocate parent I can be. So in a nutshell, thats what I am going to try and do. At this time, I am not going to get another Aspergers assessment. The school said over and over that although she scored within range of mild aspergers on the aspergers test she simply does meet the general characteristics/criteria and thats fine with me (for now). We are going to increase peer interaction (groups and one on one) as the school highly recommended (their only recommendation) and see how that goes.

I can't say thank you enough for all of the information/support offered. I am sitting here right now watching her (through the patio door) in the ditch in the front of our house catching frogs/snakes (and gosh knows what else ) and just feel so fortunate for who she is. She is an awesome blessing to our family.

Again, thank you.
Suzy V.

 

[SueM in MN]

 

[Princess Mommy]

You have gotton some wonderful advice already!

I don't have a child with autism myself, but I can direct you to the school I work with: http://www.eden2.org/eden2.html

They might be able to send you some information as well...

Best of luck to you, and if you ever need anything please feel free to pm me.

 

[s&k'smom]

I haven't read all the posts but I will go back so if I am repeating I'm sorry but I'm a bit curious. A school board diagnosed your DD? Please get an independent eval done, psychologist, neurologist someone who is medically able to diagnosis her. That way you will know definately if this is her diagnosis. I say this because it will make all the difference in the world in regards to school and any state/federal benefits you may be able to receive now or in the future. Good luck.

 

[riu girl]

DD has been seen by a psychologist for a full evaluation. At the first appt. I took with us her most recent report card and the documentation that the school provided us from their evaluation in March.

The psychologist feels that she is NOT ASD but ADHD along with a language based learning disability, and anxiety. This is the first time an LD has been mentioned to us, we were surprised since her grades are so high. The doctor feels that there are problems with her working memory and her executive functioning and it will show up eventually academically. In these two areas mentioned above her test scores were still within average range (but low average) . One reason she felt her grades were so high was due to the fact that I spend at least 2 hours/day (even in the summer) working with DD academically to make sure she doesn't fall behind academically. Also she was privately turtored in SK and Grade 1.
fyi, her last report card had 8 A's, 3 B+'s (2 of these B+s: reading, writing ,art), and 1 B (gym).

My question: I forgot to ask the dr. about what exactly a language based LD is, any ideas???? Regarding her language she was in speech therapy from age 1 to 6 and then discharged due to her age. At age 6 she still showed a mild expressive delay (but other areas were at level). The school has done a language assessment and said she doesn't meet the criteria for extra help. They give me the impression they feel her speech is now at level in all areas.

I asked this dr. about HFA/Aspergers and she said there is a lot of overlap between diagnoses, but she felt no, she didn't meet near enough of the criteria and felt that she fit better as mild ADHD and language based LD and anxiety.
The doctor seemed shocked that she has never been on meds. She started telling us about concerta and another med I have never heard of (Risperal maybe), but she agreed that behvioural therapy is the way to go for now.

DD is not entering therapy of any sort right now, dr. only reccommended what the school did (tons of one on one and group peer interaction as well as keeping our home very structured). I was hoping that we would have come away with a few more suggestions/actual therapy options, not just having DD hang out with friends more.

Does this make any sense to anyone and please let me know anything about this type of LD.


Thank you
Suzy V.

 

[SueM in MN]

Dyslexia is one type of language based learning disorder.
Here's a site that has some good explanations of dyslexia that might carry over to other language based learning disabilities. The FAQs on that site haas some good information that look like they would be common to a lot of LBLD (so I don't have to type all those words again). The grade level "common signs" might whow why the doctor aid it would become more evident as your DD gets older - the lower grades do a lot less reading. As you get to the upper grades there is a lot more reading and writing.

Here's another site that looks good. It also has quite a few links.

And here's an article with suggested activities (which it sounds like you already have done a lot of).